I have written about the difficulty of disclosing about RA, especially at events like a Mayo Clinic Center Social Media conference. But we haven’t talked much about the other side: When we explain about RA, do people understand? Not so much.
In a recent example, I went through three rounds of explanations about why I could not do something. Granted, the other party worked for some large company far away from me. However, they were contacting me because of the work through my blog, so they knew up front I had RA. And if they wanted to, they could easily have learned on this site what that means.
The same old wall
In my fourth blog post ever, I wrote about The Wall. It was an explanation to a friend about why I’d disclose about my RA in a blog. I described the typical reactions to telling someone about RA. There is often this wall of denial that we are sick or disabled at all. There is an almost rude assumption that we are actually better now even when we say we are not.
Let’s try an experiment:
People expect you to take a long walk through gravel and then stand through a meeting. They lead you up long flights of stairs. They don’t offer you their chair. They invite you to a meeting at 0700. They don’t open heavy doors.
Many readers just read that list waiting for a punch line – because they don’t have RA.
However, readers who have RA heard something different: OUCH.
Bluntness is the only solution
Unless you live with someone who has RA or have read this blog frequently (including the comments pages), you have no idea.
A short list to help you out:
- It’s a problem when my care-giver is seated too far away. I need help.
- In airports, I use wheelchairs and assistance for the disabled.
- In restaurants, I look for the easiest thing to cut because at home I eat with fingers more.
3 Things I wasn’t asked, but you need to know
- RA affects people differently, having flares of various lengths. Mine has lasted almost 6 years.
- RA treatments don’t work on everyone. I’m part of the lucky “non-responding” 1/3.
- RA can affect many or few joints. All of mine are affected, including ribs. It hurts to breathe.
Dear Person with RA:
We are different in some ways and the same in others. I’m hoping I’ll have better luck being more specific about how RA is affecting me personally. What would your list be like? Would it help explain your RA?
Dear Person not living with RA:
Please don’t assume you understand how well we are or what our abilities may be. Most of our symptoms, from joint pain to heart trouble, are invisible to you.
Postblog: By the way, that early post about the wall contained the words that became my mission statement. I wrote it off the top of my head, sitting watching my baby play. I’ve since seen it elsewhere, in places I had never visited. If it sounds familiar, you heard it here first.
- The Tug of War of RA Awareness: Privacy of Pain & Agony of Disclosure
- Easier Said Than Done: Simple Things That Seem Impossible
- Managing Rheumatoid Arthritis: Transparency and the Wall